Loss of coordination in leg - Official runner's dystonia / focal dystonia discussion thread

Actually, I shouldn’t say it’s gone “completely”. However, when it does happen, it simply a matter of readjusting mentally, and it goes away.

Basically: jog in place with no muscular effort in your ankles and calves, bend knees fairly significantly so that you almost feel lower than usual to the ground, and then, while staying tall, simply fall forward, and let your feet naturally do the work for you. You’ll notice you’re not “driving your knees” or anything like that. You’re simply allowing your body weight to determine the pace. Mind you, it will take lots of easy miles at a slow pace to get used to it, but I think this is the closest thing to a cure or successful management of the problem.

I was listening to Carrie Tollefson's interview w/ Mary Cain on her podcast, and Mary said pretty straightforwardly that she has been struggling with this issue and it led to her double hip arthroscopy. Not very surprised by this as I suspected it since the video was posted of her running with the Mammoth track club in Boulder 2-3 years ago. People were freaking out about how Salazar ruined her form (which is also true and she talked about it) but to me it stuck out as classic loss of coordination in leg.

Based on the way she talked about it I suspect she's even read this thread. Carrie mentioned that she had struggled with it as well post childbirth and specifically said that she had trouble stepping up onto curbs and felt like she was shuffling around.

Not much else to add but just wanted to say that it can get better as someone who has dealt with this since 2013 (although I've been rehabbing a compensation injury in the other leg for the past 6 months...sigh).

I never bought the "runner's dystonia" story and I still think many of us have a neuromuscular dysfunction which the medical system is not specified to recognize or treat (and I say this as a medical student myself.) Tough situation especially for those who don't have disposable income for PT, etc.

I listened to that podcast and I thought the same thing! can I ask you what worked for you? Are you able to run now ? thank you

Yep I can run. When I was first starting again these things helped me:

- wear low drop and minimal shoes (no idea what the mechanism of this is but I feel way better in them. I think the impact helps activate weak muscles, in super cushioned shoes my leg tightens up way more. ) Now i wear regular drop but medium/low cushion shoes (think kinvara, boston, launch)

- warm up with dynamic exercises (high knees, butt kicks, etc)

- after run target glutes and hips BUT be mindful of activating the correct muscles. i accidentally would rely on my hip flexors instead and everything would just get tighter and tighter. When I started my glute was so weak on the bad side it would start failing after 10s in a bridge. I would just hold it until failure and repeat 3x

Thank you. I also have success with low drop shoes. I have been wearing the Newton kismet. I was running in Hokas for a while and that was a disaster. Do you just do body things? I have noticed some improvement with squats , deadlifts.. but i also still have really bad days. I notice on days after I lift though, I actually do feel somewhat better/more coordinated. If i go too long without doing glute/leg stuff I feel much worse.

I meant body WEIGHT things sorry!

In light of the Kara Goucher news, I've turned this into our official runner's dystonia thread.

Here is our article on Goucher:

https://www.letsrun.com/news/2022/02/kara-goucher-announces-she-has-been-diagnosed-with-runners-dystonia/

Thank you Rojo - if any good comes out of Kara's plight, it will to be to bring this issue into the spotlight! This is a monster thread, I hope more people in the medical community take notice.

Wow...Mary Cain, Carrie Tollefson, and now Kara Goucher?

I still remain unconvinced about the existence of runner's dystonia. To me it seems fundamentally different than the other functional dystonias (think a violin player whose hands cramp up involuntarily every time they try to play.)

Curious if anyone has tried botox injections for this. I considered it for my piriformis but ultimately was too nervous about a potential bad outcome.

I am so glad that the LRC forum forces me to read all 65 pages of this thread sequentially! I was going to read up on this interesting issue, but since there's absolutely no way to find the useful information quickly, I'll just do something else. What a timesaver!

I am not allowed to comment on the Kara Goucher thread.”as I am unregistered. There can be a psychogenic component at play here. The physiology of the human body is a mystery because as advanced as we think we are, we are so primitive in our understanding. Future generations will realize this. Good luck to Kara.

This disorder is awful because many times I questioned if it is all in my head. I sympathize with anyone going through it. Fortunately, I would say I am 95% recovered now. Here is what I learned:

Cause: It began my sophomore year in college after I strained my hamstring tendon. My refusal to rest and let the tendon heal caused muscles to compensate. I had many diagnosis including a plica, labral tear, and leg length difference. In the end, the likely culprit is a combination of my partially torn hamstring tendon and months of compensating.

Symptoms: The loss of coordination typically happened after 1-2 miles of running tempo pace. It would not go during easy running or sprinting. There was a 100% chance I would begin loosing coordination in an 8K or 10K. There was little pain, but it would begin with numbness in the outside of my left knee and eventually travel down so that it looked like I was dragging my left foot along the ground. I felt neurological because it was almost as if the muscles were firing without my brain's permission. As someone who was trying to run 5:20 pace in a XC 10K, I would slow down to 5:50-6:15 pace when the coordination issues began.

Figuring out what was going on: Fortunately, I was an 800/1500 runner. The leg prevented me from working on my long runs or running tempos, but interval work was typically fine. I finished my college career and moved to the Rockies. I still wanted to run competitively. I trained for halfs and fulls with the coordination issue still present. Eventually, I gave up and began running trails.

Healing: What worked for me may not work for everyone. As I started to learn how to trail run, I noticed that hard efforts did not cause lack of coordination like on the roads. The repetitive motion of road running triggers something in my leg that causes the loss of coordination. The non-repetitive strides in trail running never triggered the "something." Here is what helped me heal-

- Trail running - do something that requires you to run in a way that you are not used to. If you don't have rocky trails or just hate trail running, try mixing up sprinting and walking, or do some hill sprints. Anything to break your brain/neuro system from the bad habit of losing coordination.

- Lift. I never lifted. I now do squats, calf raises, box jumps, lunges and other activities that force me to do athletic motions with my legs that are not running.

-Stop running when you loose coordination. I began bailing on workouts if my leg issue flaired up. Do not let your body get in the habit of loosing coordination. This was the hardest part because I hate bailing on races or workouts.

All this information is just to help those struggling with this issue. My experiences may be different than yours. Every cause is likely not the same. Kara might have a totally unrelated issue to mine. I just hope that those struggling with this issue know that it is not in your head. Best of luck to all.

participation_trophies. can you run on roads now? I am noticing some improvement with lifting too.

mddruns wrote:

participation_trophies. can you run on roads now? I am noticing some improvement with lifting too.

Yes, I can. There is now a small chance that it flares up in a big effort, like at the end of a half or full. But, overall I am close to loss of coordination free.

Thank you for answering so quickly, How long did it take to eventually be almost symptom free?

I have never been diagnosed but I think I have the same thing as Kara. It got to the point I couldn’t walk at times and I had to give up running almost completely. I’m 43 and haven’t run much at all since 2012 as a result. Coincidentally, my 2nd to last race in 2011 was with Kara in Miami Beach. Maybe it’s contagious?

I had similar symptoms. After ten years of MRI's it was no longer diagnosed as sciatica, which I had. Not until my signs got worse did a doctor check my upper back and discovered an Ependymoma Tumor at T10.

I didn't realize they were just checking the lower back for years and were missing t-10 because for ten years they were scanning the lower back. Kara, please ask your Dr to do a complete spinal cord exam. Your symptoms sound a lot like what I went through. I don't want to scare you, but by the time they found my tumor and extracted it, I was left with paraplegia from the waist down.

I bought a racing wheelchair and am still competitive, but I do miss running.

Please ask your doctor's to check your whole spine.

I place running wrote:

I had similar symptoms. After ten years of MRI's it was no longer diagnosed as sciatica, which I had. Not until my signs got worse did a doctor check my upper back and discovered an Ependymoma Tumor at T10.

I didn't realize they were just checking the lower back for years and were missing t-10 because for ten years they were scanning the lower back. Kara, please ask your Dr to do a complete spinal cord exam. Your symptoms sound a lot like what I went through. I don't want to scare you, but by the time they found my tumor and extracted it, I was left with paraplegia from the waist down.

I bought a racing wheelchair and am still competitive, but I do miss running.

Please ask your doctor's to check your whole spine.

If they checked for MS, they would have done an MRI with/without contract of brain/cervical/thoracic spine - that's the standard MS protocol. They do that before they do a lumbar puncture (which she had).

err....contrast, not contract